Long Overdue

A long overdue update - lots has been happening. Can't remember when we last 'spoke' but here's the lowdown:

Leo had the cataract in his right eye removed and replaced with an IOL at the end of February ... so far, so good! His close vision was nil with the right eye alone and at distance was 6/48 which means that just using his right eye, he'd have to be at 6 metres for something I can see with my glasses at 48 metres. So his sight in that eye is 6/15 and with no close vision as the IOL (implanted lens) does not accommodate as 'normal' lens do. He can see distance but not focus. He's therefore currently using his left eye for reading and close work such as writing and once the cataract in his left eye starts affecting him day to day, the doctors will replace that lens with an IOL also. This then means he'll need bifocal glasses.

So all was going well and the bit PJ and I dreaded most after finding out the doctors may not be able to put an IOL in i.e. he'd be blind in his right eye with no lens, was the eye drops post-op. Sounds very silly doesn't it? Leo has had chemo and radiotherapy, blood transfusions and far too many drugs to name here ... and yet, we were worried about the eye drops. Purely because Leo has always hated eye drops. Having his blood taken ... no probs. Eye drops ... forget about it!

But lo and behold, why should we be surprised that Leo steps up and does a grand job with his eye drops and even goes back to school one week early after his op because he's just on awesome form.

Phew!

BUT then he develops this 'growth' of sorts on his eyeball itself. You couldn't see it to look at his eye. You could only see it if you pulled the eyelid down and he looked up at the ceiling. So it's kind of hidden away and his eye feels hot. Leo described it as having a 'hot force field' around his whole eye. Not good. The long and the short of it all is that after seeing four eye specialists, he has a hole in his eye from an injection given during surgery. The injection was for a steroid which 'may' have been injected at the time of the op. I say 'may' as the steroid and injection are not listed on his surgery notes. I know because not only have I seen them but I asked the surgeon to show me where this injection and prescribed drug he thinks he injected into my son's eye was not listed anywhere. This after the same surgeon had 3 hours earlier said he didn't know what this 'growth' was, had nothing to do with the surgery and that we should start looking at other issues medically such as leukemia or tumours relating to radiotherapy or sarcoidosis???

I am now happy to say that after a week of the hole in Leo's eye getting bigger, it is now staying the same size. So nothing is needed intervention-wise just yet. He is on 3 lots of eye drops - steroids to help it heal, antibiotics to help prevent infection and also a lubricant as he has a very dry eye due to radiotherapy. None of the 4 eye surgeons we've seen including Leo's surgeon have ever seen this type of thing before so we're not sure what the future holds for that right eye. I hope the eye heals on its' own with no surgery as surely if it requires surgery, then that's at further risk of not healing also. The feeling is that because the eye has had massive doses of radiotherapy, the eye is not healing as it should do.

Phew again!

No one tells you when your son has cancer at the age of 3 about the emotional turmoil which continues to ravish their lives. On the one hand, we're soooo very thankful he's alive today as that was a very real danger we had to deal with throughout his treatment. But on the other hand, is it wrong for a mother to just want to never see the inside of another treatment room or to have to hold their son's hand so tightly whilst he undergoes his 62nd general anaesthetic in nearly 3 years? I just kind of want him to be left alone and yet, as soon as I write that, I know that as long as he doesn't relapse or succumb to a secondary cancer or tumour, Leo will always be in the medical system. Whether it's the growth hormone or the thyroid issues, or his kidneys, or his eyes or x or y or z .... but at least we have him here with us and we're able to hug and kiss him as much as we want every day. I know other mums whose children have had to fight the battle with cancer again and who are very unlikely to make it, so I shouldn't complain about yet another hospital visit, I know.

Leo's planned scan for the end of April has been scheduled a little earlier than planned and is this Friday so we'll cross our fingers, toes, legs and anything else we can that the MRI shows an unchanged picture to the lump which has been left behind. His usual chest x-ray which again, should have been at the end of April, is also on Friday so this is the one we kind of get more concerned about. We know if it comes back, it's more likely to be in his lungs which is only detectable by an x-ray and no outwardly obvious symptoms - and also if it starts to grow again in his head, we're likely to see some change in his eye again as we did at diagnosis.

As I write this, Leo is still not right from the iron deficiency anaemia he's had since early January. The fabulous thing about our son is that whilst he's missed every morning of school since mid-January, he's keeping up with his classmates with work. A maths test on Friday saw him score full marks despite not being in school for any of the work! Now that's my boy! His daddy was pleased ... being a maths teacher and all!

He'll have his bloods checked again on Friday and so we'll find out if the iron he has twice daily and having any affect on his iron stores. We've been told it can take a good year to develop good iron stores again and as he's still not quite right in terms of energy and appetite, we don't think his blood work will show anything new!

Right, off to bed. It's a new week and lots going on including a Coffee Morning on Tuesday to raise money for Clic Sargent, the children's cancer charity in the UK who do so very much for children just like Leo.

Tomorrow's a new day ...